This is my first post, we live in the UK and my husband (age 69) was first diagnosed as probable akinetic rigid Parkinson late 2018. He was prescribed Madopar, then Pramipexole and finally Sinemet but none gave any significant improvement and he was then referred to a neurologist who thinks he probable has MSA-P
It was suggested he might benefit from an apomorphine pump (if we choice to go that way) but I can find very little information about it and would appreciate hearing from anyone with experience. His blood pressure is normal and I understand if we were to consider it he will have to undertake a Apomorphine Challenge to estimate his tolerance but otherwise I am much in the dark as to what it entails.
Any experience good or bad would be greatly appreciated.
With thanks and best wishes to you all
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novagayfox
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We gave up on the dopamine agonists as they invariably had a bad effect on C’s blood pressure, which was the symptom that affected him more than the Parkinsonism ones. I can understand why they would want to check that an apomorphine pump doesn’t cause more problems than it solves.
Thanks for your input to my enquiry; I do rather think we won't be going down this route even if husband's BP stays okay, he had dreadful hallucinations when we tried a dopamine agonist. Must feel I must look into every possibility.
I don’t know if anyone with an Apomorphine pump for MSA although I have a friend with Parkinson’s who has one with fabulous results. My husband tried Madopar but that wasn’t really effective, but then he had more of the cerebellar type symptoms. Have you spoken with the MSA nurses for their advice? As I understand it The problem is that the Parkinson’s dopamine type drugs don’t work as effectively In MSA because the dopamine receptors are affected which isn’t the case in Parkinson’s usually.
Thanks for your input on Apomorphine Pumps, interesting to hear than in MSA dopamine receptors are affected, guest that is why there is a poor response to standard Parkinson drugs. I am afraid husband doesn't really want to know but imagine this response is not unique, therefore feel I must research all possibilities avenues of help.
You ask if I have spoken with a MSA nurse; we are in touch with a PD nurse, are they the same? In fact I had a email today basically to say they would not be able to do anything till at least 2021 because of the current situation. She did send some information through which I had been asking for since August.
I am pleased you have had some responses to your query.
We don't recommend apomorphine in MSA; whilst it can be effective in Parkinson's it isn't helpful for MSA and will affect blood pressure significantly. Even if your husband's blood pressure is okay now, it is likely that it will be low or unstable at some point in the illness.
Do get in touch with the MSA Trust nurses if we can help in any way.
Thank you for getting back to me with the support I have had from others and my own research I was coming to the conclusion that this wasn't going to be for us. Your comments have finalised that decision. I am sure I will be in touch again, a huge thanks.
- welcome, it always feels wrong saying that, I hope though you'll find some support, I know I have.
One of the main reasons my mum was re-diagnosed last year from PD to MSA was the response to her PD drugs, in fact what worked for her was reducing them not increasing especially in respect to the hallucinations.
There are other drugs that can help depending on individual symptoms, however you do have to find the right consultants as it's a challenge working out benefits vs side effects.
Mum's PD one said there was nothing he could do. She moved areas and our current one is amazing so I would recommend trying to find one. On being told you have to wait to next year, that's just wrong! I would fight it, you shouldn't have to shout for the right support but I've found it does work!
Thanks for your welcome and input. I am now convinced an A.Pump is not for us so one less door to kick down!
Interesting your comment about finding the right drug dosage level, after seeing the neurologist we weaned husband off his Sinemet so I kept a dairy. I think we peaked the balance on a very low dose but it's going to be difficult to get husband to try again.
It really is a balancing act. This site is always a good place to ask questions, you become an expert quite quickly. It's key because MSA is so different in each individual that you know your partner best and that's always considered - there's no MSA manual or pathway! Worth more shouting or getting the neurologist to do the referral to the Neuro support team again (maybe in your area the same as the PD nurse) - it opens up support with other professionals you'll need. And make sure you look after yourself - that's just as important.
Have you actually joined the MSA Trust? You have obviously had that response from Samantha Pavey on here, but you are always able to email or ring the nurses directly and they will always get back to you with great advice. There are fact sheets available for a range of issues as well which can help. Even if your husband doesn’t want to join for himself you can join for yourself.
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help please - is this end stage MSA?
Dad is left alone on a ward, unable to communicate and we can't accompany him and we've been told no visits allowed. HELP please
arm chair
